Rare Diseases Ireland @RareDiseasesIE
Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases. rdi.ie Dublin Joined January 2012-
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EXCELLENT VISUAL that highlights how #PPI can be integrated into the research cycle by @NIHRresearch Diagram outlining the research process and how patient and public involvement can be embedded in it @NIHRinvolvement @NIHRtakepart @RAiNAllIreland @rare_trial @RareDiseasesIE
Join us at 12.30pm today for our online event for people living in HSE region Dublin and South East to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: ow.ly/YqkE50Rhj2e #GetRareAware
#GetRareAware Take Action on getrareaware.ie Let's expand Newborn Bloodspot Screening services - more commonly called the 'heel prick test'. Screening provides early diagnosis & access to support and treatment. Listen back to our first webinar. youtube.com/watch?v=T0oH4v…
Did you know Ireland currently screens newborn babies for fewer diseases than 75% of other European countries? Support our 2024 Get Rare Aware campaign and take action now on getrareaware.ie #GetRareAware
'New ways of working' can transform services & provide children with timely access to care they need. An example of healthcare service innovation putting patient at the centre that does not cost a fortune. MORE PLEASE!!!🙏 @BernardGloster @CcoHse @roinnslainte @DonnellyStephen
'New ways of working' can transform services & provide children with timely access to care they need. An example of healthcare service innovation putting patient at the centre that does not cost a fortune. MORE PLEASE!!!🙏 @BernardGloster @CcoHse @roinnslainte @DonnellyStephen
Our next online launch for Get Rare Aware is on Tuesday, 23rd April at 12.30pm for people living in HSE Dublin and South East. You will hear about the importance of the newborn screening heel prick test for early diagnosis and treatment. Register here: bit.ly/GRA-DublinSthE…
Join us at 12.30pm today for our online event for people in HSE region Dublin and Midlands to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: tinyurl.com/ycxpt8uz #GetRareAware
Did you know Ireland currently screens newborn babies for fewer diseases than 75% of other European countries? Support our 2024 Get Rare Aware campaign by visiting getrareaware.ie #GetRareAware
#GetRareAware Calling people in Dublin west and south-west, Laois, Longford, Offaly, Kildare, West Wicklow and Westmeath! Join us for our first regional launch of our 2024 #GetRareAware campaign at 12.30pm on Thursday, 18th April by registering at: bit.ly/GRA-Dublin-Mid…
#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.
#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.
#GetRareAware Do you or someone you know have experience of being diagnosed through the newborn heel prick test? Would you like to share your story? We'd love to hear from you - contact us on [email protected]
It's time to #GetRareAware! We need to expand the newborn screening test panel in Ireland. Learn more about this important public health service at our webinar on Thurs Apr 18 at 12.30. Register to attend eventbrite.ie/e/get-rare-awa…
Proud to partner with EURORDIS on ECRD, May 15 & 16! Check out programme - bit.ly/4asiL77 Learn more about event via Rare On Air podcast - bit.ly/43QD4sH Get 15% off with promo code: ECRD24_15%_Partners Get your tickets now! #ECRD2024 invt.io/1txb94bsuuw
We are hosting an event with @InclusionIre for children with intellectual disability of all ages to help develop accessible resources for when they are accessing healthcare. Register now: eventbrite.com/e/866102665387… Online Event: eventbrite.com/e/875915184897… @LucyBray9
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Health Research Chari.. @HRCIreland
4K Followers 2K Following National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| Fulbright Scholar || Children's Nurse I PhD I #UCD #Fulbright #RareDiseases #RAINDROP #COVISION #SAMPI Views are my own
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Neurological Alliance.. @naiireland
3K Followers 754 Following NAI is the national umbrella body representing over 30 not for profit organisations working with people with neurological conditions & their families.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
IPPOSI @IPPOSI
4K Followers 1K Following IPPOSI puts patient voices at the centre of healthcare & policy. Irish Platform for Patient Organisations, Science & Industry. Registered Charity: RCN: 20062934
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Sally Ann Lynch @annnlynch
627 Followers 296 Following Geneticist Cyclist Baile Átha Cliath views my own
raising_rareness (Lyn.. @raisingrareness
962 Followers 2K Following Mum of 3 Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 #AAC MA Archaeology UCC Opinions my own
Lorna @LornaKerin
794 Followers 679 Following Passionate about the power of participatory research to improve health research, service provision & clinical outcomes. Own views.
Tracy 💜 ☮️📸.. @AddressingLife
10K Followers 6K Following Grieving mom of Brendan Bjørn & devoted mom to D; Writer; Disability Advocate. Former Carer, School Counselor & Child/Family Therapist. BA & MA in Counseling.
Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
School of Medicine @TrinityMed1
5K Followers 954 Following The mission of the School of Medicine, Trinity is to facilitate and provide Medical Education to the highest international standards
Lorraine Dempsey @LorDempsey
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KevP @kwpryor
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Stacey Daly @StaceyLeighDaly
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Shannen O'Flaherty @shannenof
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ريم @ReemAlluhibi
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Sean Mc Mahon @seanliammcmahon
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Elle Cole (She/her) @Cleverlychangin
11K Followers 9K Following International best-selling (8X) author Speaker & advocate for #sicklecelldisease Producer & #CleverlyChangingPodcast Host 💌 [email protected]
Suzanne Costello @suzannemsc
2K Followers 5K Following CEO @publichealthie , President @EuroHealthNet and Board member @NMIreland Views my own.
ClinRheumatol @ClinRheumatol
7K Followers 3K Following Clinical Rheumatology - Journal of the International League of Associations for Rheumatology 2022 Impact Factor: 3.4 Editor-in-Chief: Prof. Adewale Adebajo
Courtney Jaycox @CourtneJayc
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Michael Doyle @michaelgerdoyle
89 Followers 316 Following Neurology Specialist Registrar. Epilepsy Research-Beaumont Hospital, RCSI FutureNeuro SFI. Enthusiastic about all sports. Views my own.
JARDIN_Joint-Action @jardin_EU_JA
87 Followers 127 Following JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
Hesham Gibriel @Hesham_gibriel
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Aileen Murphy @aileenmurphy_
870 Followers 876 Following Health Economist: Senior Lecturer, University College Cork
aboturki @abuturki34
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Psychology Voices Ire.. @psychvoicesire
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IndependentLE24 @LElection24Sean
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Susie B @susieb16
2K Followers 1K Following 🍀 Lived experience advocate with the Irish Coalition for People living with Obesity & European Coalition for People living with Obesity ➡️ All views my own
Medical Laboratory Ge.. @labgenehub
1K Followers 2K Following 🧬 Clinical vignettes to sharpen your medical genetic diagnostic skills - great for exam prep (such as ABMGG, ABGC) and continuing certification. 🩺
GilbertinM @GILBERTINEZ
492 Followers 491 Following SRE EMEA(Europe,MiddleEast,Africa) 2019 youth fellow A social entrepreneur,disability empower-er and climate change activist#A rolling stone gathers no moos #
Adam Shanley @Adlers1
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Killian Hurley @killian_hurley
1K Followers 1K Following Associate Professor & Respiratory Physician. HRB Emerging Clinical Scientist. ERC Starting Grant Awardee. @RCSI_Irl @TissueEngDublin @LabHurley
Polaris Global Health.. @polarisGHS
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Siobhan H @siobh99
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Michelle Fitzpatrick @michellefitz_
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Vladimir Medaković @vladama
1K Followers 2K Following demokrata, dipl. ing. zaštite životne sredine, otac jedne D, suprug jedne M. #lfc #ynwa #MarfanSy ponosan potomak svojih predaka
Bláithín O'Reilly @Bla_OReilly
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Catherine Dolan @littlewomancat
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Tríona S @s_triona
19 Followers 58 Following College student, history and classics enthusiast, sci-fi and fantasy fan, music lover and family-first type of girl
Louise (Scott) Heatle.. @LScottHeatley
745 Followers 1K Following Marketing & Events Professional - Client Director & Head of @helloAlicePR Northern Ireland / Global Venue Finder @Helmsbriscoe / Board Trustee @RosiesTrust
Dr Jessica Gates @Jessravengates
324 Followers 1K Following Research Fellow @NorthumbriaUni. Qualitative research with the NHS/Care workforce and health interventions. Personal interest: Microphthalmia 👁️
Patrick Lombard @paddy_lom
43 Followers 142 Following Clinical Bioinformatician at Great Ormond Street Hospital. All views are my own.
Hop Cottage @hop_cottage
345 Followers 1K Following Planting, making, creating. A lover of seasons & cycles. Mad for winter cold water dips and swims. Cosmic dancer.
da3cbu5f5jvg @0ppvfzwe6oy
2 Followers 373 Following You are now invited to join a (cryptocurrency) discussion group created by an international team of financial analysts. ws link:https://t.co/2YRwdGqN6x
Dirección Evaluació.. @CenetecDetes
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Public Engagement MHL.. @qubengagemhls_d
948 Followers 770 Following ‘Show and Share’ – supporting researchers within the Faculty of Medicine, Health and Life Science to engage the public with their research.
UCD Body Lab @ucdbodylab
354 Followers 438 Following UCD Body Lab | Body representation | Body Image | Multisensory perception @UCDPsychology
BUCHANAN: Dublin Time.. @RobLooseCannon
16K Followers 15K Following Drinker with a writing problem. #Irish #news #poetry #history #politics #Dublin Married to @alanlambodublin https://t.co/v0q7LvJBQ8
Eva Bain @EvaBain7
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Kevin Doherty @kevinHCI
717 Followers 712 Following Asst. Professor of Human-Computer Interaction @UCDDublin | Designing better health and mental healthcare technologies | Creator @BrightSelfApp @ConciseISL
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Karen Tazi @TaziKaren
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TUH Neurology @NeurologyTUH
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MU Psychology @MUpsychdept
2K Followers 907 Following The latest news and research from Maynooth University Department of Psychology. New postgraduate taught MSc Environmental Psychology 🌳🐝
Violet-Anne Wynne TD @violetannetd
2K Followers 1K Following Independent TD for Clare | Member of JC on the Good Friday Agreement | get in touch via phone 065 684 2251 | Email [email protected]
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Health Research Chari.. @HRCIreland
4K Followers 2K Following National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| Fulbright Scholar || Children's Nurse I PhD I #UCD #Fulbright #RareDiseases #RAINDROP #COVISION #SAMPI Views are my own
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Neurological Alliance.. @naiireland
3K Followers 754 Following NAI is the national umbrella body representing over 30 not for profit organisations working with people with neurological conditions & their families.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
IPPOSI @IPPOSI
4K Followers 1K Following IPPOSI puts patient voices at the centre of healthcare & policy. Irish Platform for Patient Organisations, Science & Industry. Registered Charity: RCN: 20062934
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Sally Ann Lynch @annnlynch
627 Followers 296 Following Geneticist Cyclist Baile Átha Cliath views my own
raising_rareness (Lyn.. @raisingrareness
962 Followers 2K Following Mum of 3 Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 #AAC MA Archaeology UCC Opinions my own
Tracy 💜 ☮️📸.. @AddressingLife
10K Followers 6K Following Grieving mom of Brendan Bjørn & devoted mom to D; Writer; Disability Advocate. Former Carer, School Counselor & Child/Family Therapist. BA & MA in Counseling.
Shane McKee @shanemuk
5K Followers 2K Following Genetics/Genomics/Digital doc. Own opinions, curious, &c.
Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
Simon Harris TD @SimonHarrisTD
242K Followers 1K Following Taoiseach (Prime Minister of Ireland), Leader of Fine Gael & Wicklow TD.
Gareth Noble @GarNob
17K Followers 4K Following Children’s rights and education law solicitor. Partner in Human Rights firm KOD Lyons. Liverpool FC fan. Stella Maris soccer coach. [email protected]
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
Real Madrid C.F. @realmadrid
50.3M Followers 64 Following ⚽️ Cuenta oficial del Real Madrid C.F. 🏆@realmadriden: 🇬🇧🇺🇸 @realmadridarab: العربية @realmadridfra: 🇫🇷 @realmadridjapan: 🇯🇵 @realmadridpt: 🇧🇷🇵🇹
Aisling McNiffe 🇵�.. @McNiffecent
4K Followers 5K Following Mum of 2,Carer/passionate advocate,raising awareness of Disability esp severe/profound,Rare disease. #Connolly4Kids! We have a Health Crisis! #HealthFirst
TSC Ireland @TSC_Ireland
141 Followers 216 Following TSC Ireland is an Irish support group to create awareness of Tuberous Sclerosis Complex (TSC) disorder. Check out our website to learn more. RCN 20105969
Bernard Gloster @BernardGloster
7K Followers 621 Following Personal Account CEO HSE (Previously CEO Ireland’s Child & Family Agency TUSLA). For official HSE content go to @HSELive
EESC PRESS @EESC_PRESS
7K Followers 4K Following 📰 News and stories from @EU_EESC - the EU body representing organised #EUcivilsociety 📧 [email protected]
All Ireland Institute.. @AIIHPC
3K Followers 934 Following Working with partners across the Island of Ireland to promote excellence in palliative care https://t.co/fkzaQWofI0 https://t.co/e21Rj6hKS9
OscarsKidsIreland @OscarsKidsIE
2K Followers 67 Following Welcome to Oscar's Kids Ireland, home of the Oscar’s Kids Club. We are a family run children's cancer club founded in honour of our son Oscar. RCN: 20206106
European Society of E.. @ESEndocrinology
14K Followers 409 Following The European Society of Endocrinology, the voice for endocrinology. At the centre of Europe's endocrine community.
ERICA @ERICA_RD_EU
494 Followers 159 Following The European Rare Disease Research Coordination and Support Action
Laura Egan @our_rare_road
398 Followers 1K Following Co-Founder and Chairperson of @rareireland, proud koolen de Vries Syndrome mam and rare disease advocate, raising awareness of rare disease in Ireland
Fintan Walsh @FintanWalsh
12K Followers 7K Following Communications in Public Health 🦠 MPH at @UCC. Cartoonist. Former journalist. 日本語を勉強してます🇯🇵
Public Health HSE Dub.. @PublicHealthDNE
2K Followers 611 Following Public Health HSE Dublin and North East (North Dublin, Cavan, Louth, Meath & Monaghan) X account is not monitored 24/7. Contact @HSELive for HSE news & queries.
HSE Community Healthc.. @CHO2west
4K Followers 252 Following Galway, Mayo & Roscommon (CHO2) Core Values: Care, Compassion, Trust & Learning. A/c not monitored 24/7. #communityhealthcarewest
HSE Dublin South, Kil.. @HSECHO7
2K Followers 368 Following HSE Dublin South, Kildare & West Wicklow Community Healthcare. This account is not monitored 24/7. Contact @hselive for queries Instagram Handle @hse_dskwwch
HSE Community Healthc.. @Ch6East
1K Followers 220 Following HSE Community Healthcare East serving Wicklow, Dublin South and Dublin South East. Account not monitored 24/7. See @HSELive.
HSE Mid West Communit.. @CommHealthMW
3K Followers 575 Following High quality integrated services as close to home as possible for people of Mid West. Our vision is a quality service valued by all. Chief Off @maria1bridgeman
Chief Medical Officer @CMOIreland
7K Followers 13 Following Prof Breda Smyth is CMO in @roinnslainte. Advising Department, Minister & Government on all medical & public health matters @healthyireland @slaintecare
Department of Public .. @PublicHealthDM
338 Followers 323 Following Public health alerts & information for Public Health HSE Dublin and Midlands. Account not monitored 24/7. Contact @HSELive for HSE news & service queries.
HSE Innovation @hse_innovation
4K Followers 801 Following Innovation team @hse_innovation updates & Digital Labs
The National Maternit.. @_TheNMH
5K Followers 2K Following The NMH, which was established in 1894 is a centre of excellence, the maternity hospital of choice for women & a leader in maternal, neonatal & women's health.
HSEhealthatlas @HSEhealthatlas
66 Followers 21 Following HSE health atlas Ireland, Health information unit. More to follow....
CHO8 Midlands Louth M.. @MLMCommHealth
1K Followers 563 Following Providing community healthcare services to the people of Laois, Offaly, Longford, Westmeath, Louth and Meath. A/C not monitored 24/7.
Department of Public .. @PublicHealthWNW
198 Followers 83 Following The Department of Public Health, HSE West and North West, Account is not monitored 24/7. Please contact @HSELive for HSE news & queries.
Cork Kerry Community .. @CorkKerryCH
2K Followers 290 Following Providing quality services to enable everyone to optimise their health and wellbeing. Not monitored 24/7. Contact @HSElive for queries
HSE Social Inclusion @HSE_SI
4K Followers 1K Following HSE Social Inclusion promotes an equitable & accessible health system for all. Tweets from the National Office
Public Health HSE Mid.. @PublicHealthMW
2K Followers 347 Following Providing the latest HSE Public Health alerts and advice to help protect communities in the Mid-West region (Limerick, Clare, and North Tipperary)
HSE/South East Commun.. @SouthEastCH
2K Followers 219 Following For Co Carlow, Kilkenny, South Tipperary, Waterford + Wexford. Account not monitored. To contact HSE see https://t.co/J74uxwhDjm
HSE Health & Wellbein.. @HsehealthW
10K Followers 5K Following HSE H&W, working to promote and improve health and wellbeing to make a Healthy Ireland for all. New 2023 Podcast: https://t.co/E2gJnu4zfz
POLITICO Live @LivePOLITICO
8K Followers 431 Following Follow @LivePOLITICO for updates on upcoming @POLITICOeurope events. For information on our virtual event formats, contact [email protected]
Department Public Hea.. @PublicHealthSE
853 Followers 379 Following Providing the latest Public Health alerts and advice for the Department of Public Health HSE Dublin & South East. Not monitored 24/7 #ForUsAll
Sara Nolan @saraob1901
49 Followers 129 Following
Karen Morgan @KarenM131719
11 Followers 52 Following
Rare Disease Clinical.. @rare_trial
736 Followers 1K Following HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core
RAiN @RAiNAllIreland
480 Followers 474 Following All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
VIA @VasculitisIA
435 Followers 183 Following Providing support and information for people with vasculitis, their carers and and interested health professionals in Ireland
Children's Health Ire.. @CHI_Ireland
3K Followers 249 Following Children's Health Ireland official account. Our vision: Healthier children and young people throughout Ireland.
Sam Doyle @DrSamDoyle
409 Followers 424 Following Consultant Clinical & Biochemical Genetics @_TheNMH | Prev Consultant Prenatal Genetics @BWC_NSH | MD @UCDMedicine | MSc @RCSI_Irl | MSc Genomics @unibirmingham
Integrated Care Progr.. @ICPOPIreland
4K Followers 320 Following A HSE funded initiative to tackle the health problems of the aging population in Ireland
Screen4Rare @Screen4Rare
185 Followers 51 Following A multi-stakeholder platform launched by IPOPI, ISNS and ESID aiming to exchange knowledge and best practices on newborn screening for rare diseases.
Ellen Crushell @ECrushell
1K Followers 363 Following Clinical Lead, National Clinical Programme Paeds/Neonatology HSE/RCPI. Paediatrician - Metabolic Disorders, CHI Temple St and Crumlin, Dublin.
Justine O'Flanagan @JustineOFlanaga
350 Followers 1K Following Syls, swimming, services for special needs. Ehlers-Danlos Syndrome #ZebraStrong
Patrick Toland @CeoNIRDP
506 Followers 1K Following CEO of The Northern Ireland Rare Disease Partnership - [email protected]/BSO Encompass MyCare Patient Experience Lead/Director Storyholders
OI Foundation @OIFoundation
3K Followers 460 Following Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.”
OIFE @OIFE_OI
1K Followers 5K Following Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella organization for OI-societies around the world.
Seán Kelly MEP @SeanKellyMEP
21K Followers 5K Following MEP Ireland South | Leader @FineGael in EP |@EPPGroup | Former President @OfficialGAA | Committees: Industry, Research & Energy; Int. Trade; Constitutional Aff.
CavernomaIreland @CavernomaIre
241 Followers 1K Following ☘Cavernoma Ireland is a support group to help people in Ireland who are affected by #cavernoma, including their families, friends and carers. #CCM
Scoliosis Awareness &.. @support_ireland
696 Followers 994 Following Volunteer Advice & Support group for Patients/ families living with Scoliosis on the Island of Island. Spinal Taskforce Scoliosis Co Design Board
Mick Wallace @wallacemick
374K Followers 933 Following Builder. Breaker. Member of the European Parliament. https://t.co/QbptCVDoOG
Grace O'Sullivan MEP @GraceOSllvn
19K Followers 5K Following Climate & social justice activist 🌍. Ecologist 🌱. Surfer 🏄🏼♀️. Mother. Green MEP for Ireland South 🇪🇺. @greenparty_ie spokesperson on the marine.
The latest edition of DYSTONIA ADVOCATE the newsletter of Dystonia Ireland dystonia.ie/wp-content/upl… @dystoniaeurope @naiireland @Dystonia_Res #Dystonia #DystoniaAwareness @Neurology #MovementDisorders @svuh @dni_neurology @RareDiseasesIE @HRCIreland @rarediseasesnet @rare_trial
Good News! With importance of patients voices in the process recognised. Now we focus on National Govts of Member States to ensure that voice continues to be valued ! #rarediseases @RareDiseasesIE @IPPOSI @rareireland @Retina_Int @padraigosull @JohnLahart @DonnellyStephen
📣 Good news! In the today’s plenary vote, MEPs voted on reforms to the EU’s pharmaceutical legislation. We welcome the position adopted by @Europarl_EN and hope the Council will take the opportunity to build on it going forward. Read our full statement: go.eurordis.org/MsdxZ6
Great initiative, well done @rachsail @rare_trial @sujas15 @RAiNAllIreland @RareDiseasesIE and everyone involved #ThinkRare
"Exciting news! RAIN (All Ireland Rare Disease Research Network) is thrilled to collaborate with Rare Disease Research Catalyst Consortium (RDCat) to propel rare disease research forward in Ireland and strengthen collaboration across Europe. Together, we can make a difference! 🌟
We are hosting an event with @InclusionIre for children with intellectual disability of all ages to help develop accessible resources for when they are accessing healthcare. Register now: eventbrite.com/e/866102665387… Online Event: eventbrite.com/e/875915184897… @LucyBray9
Why do we celebrate #INSD? 👉Raise awareness about newborn screening 👉Encourage scientific advances in newborn screening 👉Support the exchange of information & best practices #NeonatalScreeningMatters across the world! bit.ly/3mQjcEV
Access to a consultant neurologist should not depend on where you live. Join us online on Monday April 15th at lunchtime, to call for a dedicated Neurologist for Mayo University Hospital Hospital. Register at tinyurl.com/2ze63kpp #patientsdeservebetter #Mayo
The 2022 EU regulation standardises Health Technology Assessment (HTA) across Member States to ensure uniform, swift access to treatments through inclusive stakeholder participation for transparent, effective evaluations. 📖 Read the full article: go.eurordis.org/qxdLUK
We need a permanent home for our genetics services @RareDiseasesIE @rareireland #genomics
Breaking: there is no room for national genetic testing lab in new Children's Hospital - here is why this lab is so important youtu.be/iOFELMeTLAU?fe… @RareDiseasesIE @rareireland
Increasing physical activity has many benefits for our overall health and wellbeing. #EveryMoveCounts so check out the new Physical Activity and Sedentary Behaviour Guidelines at gov.ie/en/publication… @HsehealthW @HealthyIreland
In 2021, 38,000 newborn babies were diagnosed with a rare disease as a result of #neonatalscreening. On 28 June, we will highlight the importance of #neonatalscreening for those living with a rare disease. Find out more 👇 bit.ly/4bqsHPB #INSD
"A day to celebrate progress such as newborn screening & a time to acknowledge the need for further developments such as improved diagnostics & access to innovative treatments". Delighted to partake in #LightUpForRare with Kerry families and our Mayor of Tralee Terry O'Brien.
🗣️ “JARDIN is more than a joint action. For us, it is a lifetime opportunity to have equal access to evidence-based care and the assurance of the best expertise.” - @inesernando Read our full statement about the @jardin_EU_JA kick-off meeting: go.eurordis.org/LG8NLX
We've launched a 🆕 Joint Action with #EU4Health funding to improve the diagnosis, treatment & care of patients with #RareDiseases @jardin_EU_JA will integrate European Reference Networks (#ERNs) into national health systems Read more: europa.eu/!6YWXrb #HealthUnion
We need to speed up the process for the approval of drugs for rare diseases that have been given the green light by the European Medicines Agency ✅ Many families are waiting too long for the medicine they need. 💊
It’s #InternationWomensDay! ✊ Today, we honour the countless women who dedicate their time, energy, and expertise to making a difference in the lives of those impacted by rare diseases. 🫂 #IWD2024
Weren’t able to join us live on #RareDiseaseDay? Catch up now! Watch the @Europarl_EN event with @yann_eurordis & @dani_drachmann of KHI for an informative and thought-provoking discussion showcasing why we MUST #ActRare2024! 🇪🇺 europarl.europa.eu/committees/en/…
🌟 Good News! @DeirdreCluneMEP has pledged to support #ActRare2024, championing efforts to tackle the issues facing those living with rare diseases in Europe. Join us in thanking MEP Clune for her commitment! #RareDiseaseDay #EU
Lucy says being treated equally is important to her: Lucy has Harlequin ichthyosis and is a member of the new All-Ireland Children and Young Adults Research Advisory Group for Rare Diseases. Listen to Lucy's message to everyone here 👉 shorturl.at/npwHO #RareDiseaseDay
March 2011 Alanna was diagnosed with #koolendeVriesSyndrome, before this I had no idea of #RareDiseases. Since her diagnosis has taken us on the most incredible journey #RareIsProud #RareIsMany #IAmNumber17 @KdVSFoundation @annnlynch
Love it! Warrior ladies! 💚🤍💪 #IamNumber17 @RareDiseasesIE @rareireland @eurordis #RareDiseaseDay
Showing our support for #RareDiseaseDay2024 at @SwordsCastle1 yesterday. Thanks to the lovely children, parents (& even teacher!) for coming along! Many thanks also to @Fingalcoco for having our beautiful castle looking resplendent in its colours for #Rare. #RareIsProud
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